Newly Diagnosed at 41

arboesch
arboesch Member Posts: 4
edited March 2014 in Prostate Cancer #1
I was diagnosed by 2nd opinion with early prostate cancer. 2 cores from biopsy showed cells. Gleason of 3+3=6. Not sure of what to do from here. My urologist is 65 and hadn't heard of robotic surgery.

Comments

  • jweindel
    jweindel Member Posts: 10
    A urologist who hasn't even heard of robotic laparascopic surgery to remove the prostate probably has not been keeping up with the most current trends in the treatment of prostate cancer. This doctor may not be the one you would want conducting your treatment.

    At 41, you are much too young to be joining this club (which no one wants to join). That said, it sounds like you have at least caught this thing very early. I would suggest you need to embark on an intense course of study of the subject. You have time to make a careful and thoughtful decision about your treatment. I would personally recommend you read Dr. Patrick Walsh's book, A Guide to Surviving Prostate Cancer. There are several other books, as well, by Strum and others.

    I am two years post surgery (open radical prostatectomy), and have had an undetectable PSA so far. Good luck in determining the right course of action for you...and once committed, don't look back or second-guess.

    Jerry
  • stuart
    stuart Member Posts: 88
    I agree with Jerry...You should consider another urologist...It's important for your doc to know all the treatment options so that you can determine the best way to go...The more you educate yourself the better questions you can ask your doc...
  • william1
    william1 Member Posts: 35
    I totally agree with the above replies. When I was diagnosed in Oct 2005 at age 53 I was totally devastated as well as completely ignorant of this disease.

    My cancer was discovered as a result of my participation in the annual prostate screening program that takes place each September. A few days later I recieved a letter advising me to see a urologist due to a high P.S.A. for my age.
    My first reaction to the letter was that it must be a scam to drum up business for Urologist. In early October I called for an appointment and subsequently surrendered to what must have been one of the longest D.R.E.'s on record followed by a rectal sona-gram and 10 biopsies taken.

    The results; One of the ten specimens revealed 40% cancerous tissue, Gleason score (3+4) = 7, stage T2a. My local urologist put his personal ego aside and admitted he only performed 6-8 surgeries a year, mostly on older men who's sex life, for the most part, was not as frequent as that of younger men and suggested I seek the most experienced surgeon in my area for a second opinion. I really appreciate his honesty which hopefully steered me toward a curative treatment with the most modern attempt to eliminate or reduce known side effects. Next, he loaned me two huge books and advised me to educate myself as much as possible so I would understand the current and future complexities of treating this disease. From the books I discoved numerous web-sites leading to sources of endless information on prostate cancer and complete discriptions of the many treatment options available.

    Your Gleason Score reveals a slow growing cancer at this point. You have to be your own advocate. Was your second opinion performed by a Urologist specializing in Prostate Treatments. How many surgeries has he/she performed and what were the patient statistics on in-continency and impotency.

    In the end all that matters is if you truly feel comfortable in the dicisions you will have to make. It's an obligation best not taken lightly.

    We are all here to offer our assistance in any way we can. To come here is a step in the right direction.

    Good Luck and May God Bless,
    william1
  • Willx
    Willx Member Posts: 41
    Take plenty of time to make a decision but don't put off making a decision. I was 58 at the time of my diagnosis (chose surgery) and was angry because I felt too young to have the disease. YOU are too young. My gleason score was the same as yours, and had I to do it over again, I would choose the radioactive seeds.
  • stuart
    stuart Member Posts: 88
    I had external beam radiation and seeds and hormones...That was five years ago but I am not "cured"...My PSA began to rise so I am back on hormones....My PSA dropped... So at this point I am staying on the meds...Whatever approach you decide go with a doctor who has a lot of experience...I asked my doc if I could speak to some men he has treated...I received calls from a number of his patients...It's always worth speaking with men who have gone through treatment...You might check out a Prostate Man to Man group in your area...You can get a lot of support...
  • KMiyoko
    KMiyoko Member Posts: 13
    Hi,
    Sorry, about your diagnosis. My husband was 43 yrs. old when he found out he had prostate cancer. We opted to have the Da Vinci Robotic Surgery at the City of Hope in Duarte, California. Before making a decision, I agree that you should really research out your options of treatment and decided what's best for you. We opted for the surgery in hopes of getting rid of the cancer. His PSA now has been what the doctors say is undetectable at this time. I also suggest that you discuss all of your options with your significant other, 2 heads are better than one. Besides that you can both support each otther through this time. Here are a few web site for you to look at:
    http://www.ucihs.uci.edu/urology/prostate/patient_inst/curpatient.html
    (UC Irvine Da Vinci surgery)

    www.davinciprostatectomy.com
    www.intusurg.com
    (Da Vinci Robot web site)

    http://www.cityofhope.org/home.htm
    (City of Hope web site)

    http://www.healingwell.com/
    (Prostate Cancer Forum where you can talk to other men with prostate cancer)

    Good Luck,
    Kay
  • rogermoore
    rogermoore Member Posts: 264 Member
    arboesch,

    I can't add a lot to what has already been said. Probably the first important thing is to get a second opinion from an independent DR. i.e. not associated in any way with your current physician. It would concern me greatly that your Dr. has not heard of robotic surgery!

    Once the second opinion confirms the first, attempt to locate a VERY qualified surgeon. This is YOUR life and your body so you (and your significant other) should feel very comfortable with the surgeon you select. Don't let the cost enter into the selection of the surgeon, if possible. I had to pay a little more by selecting a surgeon out of the area in which I live. I am thrilled that I did.

    Also, keep in mind that the results do not have to, and may not be, earth shattering. Some of us have outstanding results. But, everyone is different, every circumstance is different, every surgeon has different techniques, and therefore results vary from patient to patient.

    Keep a positive attitude, research the best you can, and once you make a decision, go for it.

    If you would like to talk privately via e-mail free to e-mail me from this site.

    Best of luck,

    Roger
  • bossfan
    bossfan Member Posts: 1
    Willx said:

    Take plenty of time to make a decision but don't put off making a decision. I was 58 at the time of my diagnosis (chose surgery) and was angry because I felt too young to have the disease. YOU are too young. My gleason score was the same as yours, and had I to do it over again, I would choose the radioactive seeds.

    Willx:curious as to why you said you would have chosen the seeds. What has your experience been with incontinence and impotence, if I may ask. I'm 58, just diagnosed and am pondering treatment options. My urologists and oncologists are pointing me toward surgery. Thanks!
  • sonnyboy
    sonnyboy Member Posts: 1
    My husband was recently diagnosed, at age 48, also with two biopsy cores positive (Gleason 3+3). At the time of his annual exam, his PSA was still at 1, but after an abnormal DRE he chose to have a biopsy rather than watchful waiting for 6 months. We're very thankful it appears to have been confined to the prostate, with no involvement in the lymph nodes, seminal vesicles, etc.

    I agree with the other postings about researching your options. Dr. Patrick Walsh's books are very informative. After a lot of information gathering, my husband chose surgery -- at Johns Hopkins with Dr. Walsh. We were pleasantly surprised that out-of-towners with no connections to Hopkins could get in to see Dr. Walsh for a second opinion and then surgery. He treats his patients and their families with such care and dignity!

    My husband's surgery was Feb. 15 -- flew back to the midwest Feb. 18 with no problems. Catheter removed Feb. 28 -- slight feeling of urinary tract infection (Cipro helping there). Since March 1 he's been going into the office for a few hours a day. So far so good -- no incontinence issues.

    While that first post-op PSA in three months looms large for us, so far his surgery and recovery have gone smoothly. While no one would choose this path for themselves or for someone they love, try to collect as much information as you can, then find a doctor and a facility in which you can feel confident.

    The uncertainty of the past few months has been terrifying to me as a spouse -- gathering information helped, and so did talking to friends who have also been through this, either as patient or partner. This discussion board also helped a lot.

    One day at a time, right?!
  • mtrutsen
    mtrutsen Member Posts: 3
    You have plenty of time to research treatments. I was diagnosed roughly 1 year ago at the age of 57. I tracked my PSA for 4 years in a range from 4 to 5.5. A 12 needle biopsy in 3/2005 resulted with 1 core with cancer -- Gleason 3+3, T1c and PSA of 5 at the time. I suspect that the cancer was with me during the entire PSA monitoring period. During my 9 month "research period" I met with 5 urologists. The first 2 recommended surgery or radiation; I sought the last 3 as cryosurgery specialists-- specifically focal cryo. I chose the cryo specialist with the most experience and with the prep and post-op handouts.
  • arboesch
    arboesch Member Posts: 4
    Thanks all for your help! Went to MD Anderson and have decided against radiation/seeds. Appt with 2nd urologist on the 4th. Hoping to be able to wait for 6 months (testing of course). My life has suddenly increased with speed and I have a wedding/child to complete first! :) Aaron
  • TomBk
    TomBk Member Posts: 58
    arboesch said:

    Thanks all for your help! Went to MD Anderson and have decided against radiation/seeds. Appt with 2nd urologist on the 4th. Hoping to be able to wait for 6 months (testing of course). My life has suddenly increased with speed and I have a wedding/child to complete first! :) Aaron

    Aaron,
    I am in agreement with all that has been posted so far and I believe you are choosing the right course. have a child if you really want one before the treatment begins. I was checking back with you to see how you were doing today. Hope you are okay. My gleason score was the same as yours and very early stage cancer too. I came out okay.
  • Wade39
    Wade39 Member Posts: 8
    arboesch said:

    Thanks all for your help! Went to MD Anderson and have decided against radiation/seeds. Appt with 2nd urologist on the 4th. Hoping to be able to wait for 6 months (testing of course). My life has suddenly increased with speed and I have a wedding/child to complete first! :) Aaron

    Hey Aaron.
    I just came back to work after surgery on Valentines Day. I'm 39, and am very lucky to say that I have no side effects whatsoever.
    Mine was found on accident since I wasn't even old enough to be checked for this by my company doc. I had PSA's that went from 2.9 to 5.3 in about 6 months, a FREE psa of 8%, and the biopsy came back with a gleason of 3+3+6. The Gleason was since adjusted up to a 3+4=7 after the surgeon got ahold of it.
    The erections are there, I don't have any problems with going to the bathroom, and that's about it.
    I had my surgery done in Madison Wisconsin at the University Hospital my a Dr. David Jarrard. He does the procedure both open and robotic and told me that he would not do the robotic on me since he needed to be able to feel the surrounding tissues while there. He said the robot didn't allow him to do that and wanted to make sure that he took all that was there the first time.
    I had a 2 day stay in the hospital, staples out in a week, and the catheter out a week later. It took a few days to stop the "slip" when I coughed or moved quickly, but that's pretty much it.
    I wish you the best of luck in whatever decision you make. This one worked for me.
  • arboesch
    arboesch Member Posts: 4
    Wade39 said:

    Hey Aaron.
    I just came back to work after surgery on Valentines Day. I'm 39, and am very lucky to say that I have no side effects whatsoever.
    Mine was found on accident since I wasn't even old enough to be checked for this by my company doc. I had PSA's that went from 2.9 to 5.3 in about 6 months, a FREE psa of 8%, and the biopsy came back with a gleason of 3+3+6. The Gleason was since adjusted up to a 3+4=7 after the surgeon got ahold of it.
    The erections are there, I don't have any problems with going to the bathroom, and that's about it.
    I had my surgery done in Madison Wisconsin at the University Hospital my a Dr. David Jarrard. He does the procedure both open and robotic and told me that he would not do the robotic on me since he needed to be able to feel the surrounding tissues while there. He said the robot didn't allow him to do that and wanted to make sure that he took all that was there the first time.
    I had a 2 day stay in the hospital, staples out in a week, and the catheter out a week later. It took a few days to stop the "slip" when I coughed or moved quickly, but that's pretty much it.
    I wish you the best of luck in whatever decision you make. This one worked for me.

    Wade, Can I write you by email?